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What happened to my family?

Pregnantandterrified
Community Member
Since battling a mystery disease, I’ve felt more and more isolated from my immediate family. I’ve got nowhere with the supposed “wonders of modern medicine” and so, whilst waiting for a specialist appointment I had researched, I’ve joined support groups, I’ve taken herbs and seen natural practitioners.... all with the goal of kicking this illness, breaking the code and getting back to me again. Who ever “me” is now. The problem is, my husband has not supported me in anyway through this journey. I’ve been told to snap out of it, I’ve been told my issue is a mental one. He’s even said that as far as he’s concerned there is nothing wrong with me, and I just don’t want to be better. I was heartbroken and distraught that someone could say that to me, with all I’m doing to try and heal! See, the problem is that I do t look unwell. I have a multitude of serious neurological symptoms, some that you can see, others you can’t and they come and go. I have never suffered with mental illness. Even now, I am clear and rational in my decisions and my expectations of managing this. I’m not expecting a silver bullet, just hoping for some quality of life.... and hopefully a few more years worth of life. I feel defeated. I’m exhausted. I’m even a little depressed. Because the reality of this illness is endless pain, suffering and hopelessness. If I even mention my illness, or that I wasn’t well enough to do something my husband makes it into an argument. Telling me I’m unhinged. Telling me the only thing that is preventing me, is me. That’s the hardest part. He thinks I’m being like this on purpose. What do I do? I have my first neurologist appointment on Monday. I’m hopeful that I will get a diagnosis and hopefully treatment for my quality of life. But I’m also terrified. I have a three year old son.... how does one prepare for bad news? How do I cope if this is an end game for me?
so far I’ve heard everything from MS, the brain tumour to autoimmune disease to functional neurological disease. I’m overwhelmed because I don’t want any of these! I just want to go back to happy. Back to the way my family use to be. Back to myself. I feel like this will be the end of my marriage, if not the end of my life. I just don’t know what to do.
2 Replies 2

AlwaysForgotten
Community Member

I am so sorry to hear what you are going through.

As the husband of someone who has had many medical issues, where her family were very much like your husband in not believing them, it has been hard just trying to find a doctor who will take this seriously. Over the last 5 years she has been in hospital at least a half dozen times, and at one point was basically kicked out of hospital because they couldn't find anything and believed it was all in her head. It turns out that this was in fact the case, we went to an Ear, Nose & Throat specialist who found an irregularity in the bones near her ear and after a lot of investigation it was found that she had something called pulsing tinnitus. So many so called specialists & doctors all ignored the symptoms she was describing but we never gave up. While this isn't the only issue and she has many compounding factors (including depression, anxiety, severe neuropathetic pain & chronic fatigue to name a few) it did make it very clear that if you think something is wrong, you are the best person to know that something doesn't feel right, regardless of what a doctor says. It is hard for people to accept that something is wrong when they cant see it, even more so when they have never experienced anything similar in their own lives to draw from. That is definitely no excuse for his behavior but it may help you in understanding it is a lack on his part not on you. All you can do is move forward & keep trying, get second opinions, go to different specialists & never stop pressing them until you get the answers you need. Sadly we cannot rely on doctors to always have the answers & we often have to keep looking until we can find someone who sees what everyone else is missing. But I can tell you that they are out there if you keep trying.

Thank you so much for your reply!
Your wife’s story is much the same as mine sadly. I’ve had these symptoms that have slowly worsened for over 4 years.
ive been from doctor to doctor, I’ve had test after test. I’ve been dismissed. Even accused of “lying or embellishing my symptoms” and asked to not return to that clinic. I ended up going back to a GP that I saw for years in my teens and early 20s because he knows me well enough to know I’m not insane! He referred me to a neurologist and I’ve waited 3.5 months to get in to see him. This started in the prime of my life. I was 28 and working as a fitness model and personal trainer.
They know something is wrong, it’s almost like they don’t want to be the one to break the news to me, but this is unliveable. I need some sort of treatment especially for my heart and nerve pain symptoms. I’m a shadow of my former self. My husband likens my constant nerve pain (like a shower of knives in my head, neck and chest) to whatever minor ailment he has at the time, like a headache. I think I’ve made it worse for myself by being brave? Pushing through. Now he thinks it’s laziness if I don’t do everything I usually do. I know he doesn’t understand that pain or how it effects me, but I really expected kindness, or empathy or something! Definitely not meanness..... this has been an eye opener. He’s always been a very soft kindhearted type. I’m married him because of it.